I started elementary school in the mid-1990s. The internet was still in its early stages, and there wasn’t nearly as much research and knowledge about epidermolysis bullosa (EB) as there is today. Before I began school, my mom taught me how to talk about my condition because she…
Discussion
Zevaskyn (prademagene zamikeracel), a gene therapy approved in the U.S. last year to treat the fragile skin disease recessive dystrophic epidermolysis bullosa (RDEB), can now be administered at University of Florida Health, a university-affiliated clinic in Gainesville. That’s according to Abeona Therapeutics, the company that markets Zevaskyn, which…
Discussion
Children with severe epidermolysis bullosa (EB) who take fiber or iron supplements are likely to take laxatives as well, a retrospective study in the U.K. found. “Total fibre intake did not reduce the reliance on laxatives or improve stool consistency and frequency in children and adolescents with EB,” the…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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